Friday, November 30, 2012
The ADAP Advocacy Association, also known as aaa+, encourages people living with HIV/AIDS, their families and supporters to remain vigilant on World AIDS Day. Despite the tremendous progress achieved over the last year to eliminate waiting lists under AIDS Drug Assistance Programs, there remain nearly one hundred people living with HIV/AIDS being denied access to appropriate, timely care and treatment. Celebrating World AIDS Day should represent an important first step in the coming year to completely eliminate ADAP waiting lists nationwide.
“World AIDS Day is a time to reflect on the struggles, challenges, as well as accomplishments achieved over the decades-long fight against HIV/AIDS,” said Brandon M. Macsata, CEO of the ADAP Advocacy Association. “There is no better example in recent times than what we’ve witnessed over the last 10 years with literally thousands of people living with HIV/AIDS being denied access to the care and treatment in the United States, that we know will keep them healthy, productive members of their communities. The fight over eliminating ADAP waiting lists has experienced some highs, and lows, but moving forward we need to remain focused on ensuring that not one single person is refused life-saving medication under the AIDS Drug Assistance Program.”
aaa+ and ADAP stakeholders are grateful for the additional $48.3 million appropriated toward the cash-strapped ADAPs this year – which includes the $35.0 million in additional funding announced by President Obama on December 1, 2011. According to Macsata, however, ADAPs need approximately $190 million in additional funding over current levels to eliminate the years of structural funding deficits, as well as keep pace with current demand.
As of November 15th, there were 87 individuals in 5 states on ADAP waiting lists, including 8 people in Idaho, 58 people in Louisiana and 21 people in South Dakota.
Monday, October 1, 2012
With the start of the U.S. Conference on AIDS (USCA) many activists, advocates, leaders and stakeholders will be ascending on Las Vegas, Nevada to map out strategies to combat HIV/AIDS in the United States. Some of the people attending, or organizations being represented, are recipients of the ADAP Advocacy Association’s Annual ADAP Leadership Awards. Their presence in Las Vegas will ensure that the AIDS Drug Assistance Programs (ADAPs) remain a central tenant of increasing and improving access to care for people living with HIV/AIDS.
The ADAP Advocacy Association held its 2nd Annual ADAP Leadership Awards dinner was held in Washington, D.C. in late August, which coincided with the organization’s 5th Annual Conference. Robert Suttle, Assistant Director of the SERO Project delivered an emotional keynote, calling attention to the need to reverse course on the expansion of HIV criminalization laws. Suttle found out he had HIV-infection when he was trying to enlist in the Air Force. When a contentious relationship ended, his former partner filed charges and he served six months in a Louisiana prison as part of a plea agreement. Robert proclaimed in his rousing speech that he is NOT a criminal and he is NOT a sex offender. To hear more about his story, click here.
The night featured compelling stories about the 2011-2012 awardees. The acceptance speeches stirred a gamut of emotion from the audience, ranging from laughter to tears. The evening shaped up to be a huge success because each speech invigorated the crowd.
|Group photo of HIV-positive advocates after the dinner.|
ADAP Champion of the Year: Eddie Hamilton
Eddie Hamilton has been...and continues to be...a champion in the battle to preserve robust ADAP funding. Most recently, Hamilton is at the forefront fighting the Ohio Department of Health’s (DOH) attempts to implement medical eligibility criteria in order to qualify for care and treatment under Ohio’s AIDS Drug Assistance Program. Eddie Hamilton has 15 years’ experience working as an AIDS advocate in various regions of the country. Now living in Columbus, Ohio, as of 2005, he is working with HIV-positive individuals at the grassroots level with the ADAP Educational Initiative to strengthen their advocacy voice, and effectiveness educating policy-makers about sound HIV/AIDS policy. The legal victories against the Ohio DOH have served as a model for the rest of the country, and Hamilton's leadership during the struggle earned him the ADAP Champion of the Year award. He challenges and encourages them that “complacency is no longer an option.” In Hamilton’s speech, he spoke of a dear friend living in Georgia who did not have access to medication, and thus lost his battle against the disease. Hamilton stated that his death is what continues to drive his advocacy efforts today. If you live in Ohio and would like to get more involved in advocacy efforts in the Buckeye State, please email Eddie Hamilton at ADAPEI@columbus.rr.com.
|ADAP Champion Eddie Hamilton|
When Kevin Maloney took the stage to accept his award as ADAP Emerging Leader, it was his first public speech as an HIV/AIDS advocate in front of a live audience. During his heart-felt, passionate speech he talked about his struggles, reflected on his past, and on the history of AIDS epidemic. In a memorable line, he addressed the audience saying, “...many of you in this room tonight have lost thousands of friends, I offer you my condolences; and if I can offer you any solace, you played a part in saving my life and hundreds of thousands of others.” Maloney's father was in attendance; he shared his personal experience about when he told his father that he had contracted HIV-infection and his father thought he was going to die. He applauded his father for how far he had come in his understanding of HIV/AIDS, and he paid tribute to him (which his father received a standing ovation). When Maloney's father arrived home he wrote him a letter, which has since been published online at TheBody.com. Maloney used every opportunity during his remarks to remind the audience, and others, that “we need more resources.” Maloney has served as the Deputy Director at the Community Access National Network (CANN) since February 2012.
|ADAP Emerging Leader Kevin Maloney (center), seen with Florida advocate |
Mario Perri and ADAP Advocacy Association CEO Brandon M. Macsata
As part of the company’s commitment to serving people living with HIV/AIDS, Walgreens launched its HIV Centers for Excellence (COE). By November 2011, Walgreens had certified more than 500 of its pharmacies as HIV COE in communities highly impacted by HIV/AIDS, as identified by the Centers for Disease Control and Prevention (CDC). The Director of Walgreens' HIV Pharmacy Services, Glen Pietrandoni (who also serves on the aaa+ board of directors), accepted the award on behalf of Walgreens Co. Learn more about Walgreens and what they are doing in the HIV/AIDS community by visiting http://www.hiv.walgreens.com.
ADAP Community Organization of the Year: AIDS Alabama
The success of most HIV/AIDS advocacy campaigns has always been driven by local activists, advocates and leaders. Probably nowhere else in the United States is that true than in Alabama under the leadership of AIDS Alabama. The South has been disproportionately impacted by the ADAP crisis, and Alabama hasn't been immune from the dreaded ADAP waiting lists. Throughout the struggle, AIDS Alabama has demonstrated why it was awarded the ADAP Community Organization of the Year award. Accepting the award on behalf of AIDS Alabama was its President & CEO, Kathy Hiers, and her colleague Nic Carlisle. Hiers is a well-respected leader nationally when it comes to issues surrounding HIV/AIDS and its impact on the South. With eight of the ten most infected states, and nine of the ten most infected cities being in the South, and with very limited resources, AIDS Alabama’s resourcefulness and forward-thinking strategies have allowed the doors to remain open in tough economic times. AIDS Alabama was recently featured in a Dan Rather special report about AIDS in the South that can be viewed here, and in a short film called the "DeepSouth" which can read here. To learn more about AIDS Alabama, visit http://www.aidsalabama.org.
ADAP Lawmaker of the Year: The Honorable Jim McDermott, M.C., Honorable Barbara Lee, M.C. & Honorable Trent Franks, M.C.
The groundbreaking Congressional HIV/AIDS Caucus was formed by Democrat Representatives Jim McDermott (WA-7) and Barbara Lee (CA-9), and Republican Representative Trent Franks (AZ-2). Their bipartisan leadership earned them the ADAO Lawmaker of the Year award. Accepting the award on behalf of her colleagues was the Honorable Barbara Lee in a taped acceptance speech. She thanked the ADAP Advocacy Association's hard work to ensure that people living with HIV/AIDS have access to care and treatment through the AIDS Drug Assistance Program. Combined they formed the bipartisan Congressional HIV/AIDS Caucus, which is the first of its kind in the Congress. One of the policy areas of interest is improving the cash-strapped ADAPs and ending ADAP waiting lists. To learn more about the bipartisan HIV/AIDS Caucus, visit its Facebook Fan Page.
|ADAP Lawmaker of the Year Representative Barbara Lee, |
see with Dab the AIDS Bear
Social media is increasingly playing a major role in the grassroots advocacy efforts to improve access to care for people living with HIV/AIDS. Maria’s Journal, started by Maria Mejia, has leveraged social media via video blogs, blogging, public speaking and press interviews to continually raise awareness about HIV/AIDS-related issues, combat HIV/AIDS stigma, answer questions, as well as advocate for the poor and disenfranchised. During the ongoing Florida ADAP crisis, Mejia used her online presence to spread the word to the state’s Latino community, and others, to help galvanize support for the AIDS Drug Assistance Programs. Maria has been HIV-positive since she was 18 years old, and was a previous recipient of ADAP services. Maria’s Journal can be viewed online at http://www.youtube.com/user/Mariasjournal?feature=watch.
|ADAP Social Media Campaigner Maria Mejia|
|David Brakebill, accepting the ADAP Grassroots Campaign award,|
seen with Maria Mejia
Andie Dominick is an editorial reporter for the Des Moines Register. The Register submitted monthly editorial beginning in December 2011 through June 2012, promoting a change in the state statute and the state policy that barred third-party payee like the state AIDS Drug Assistance Program from paying premiums for the state high- risk pool and the state-run pre-existing insurance plan (PCIP). The Iowa ADAP had requested a change in policy in the PCIP, and the Register supported that position in their opinion pieces. The reporting prompted two hearings in the Iowa Senate and the drafting of legislation to allow for third-party payers in these programs. At the same time, the Register uncovered poor administration and use of funds, and a lack of transparency in the operation of the programs. Although the Republican-led House did not pass the final version of the legislation passed by the Democrat-led Senate, the stories may still have a substantial impact on how the state sets up the health insurance exchange or approaches other issues related to care of persons with HIV/IADS. The articles were remarkable in their scope and breadth, and in the action they prompte in the State Senate. They required months of investigation, and led to other articles in papers like the Washington Post (Michelle Andrews 03/19/12).
|ADAP Advocacy Association Board Member Michelle Anderson,|
seen with Lepena Reid
Friday, August 31, 2012
The opening day of the conference featured a town hall-style meeting to discuss Pre-Exposure Prophylaxis for HIV prevention, or what has commonly been called PrEP. HIV Prevention in a Pill; Is it a good thing or a bad thing for AIDS Drug Assistance Programs? provided a platform for all sides of the policy debate to share its perspective on PrEP. The session was moderated by Michael Shankle, Director of Prevention and Public Policy with HealthHIV. He started off the session asking the panelists to describe in one word what PrEP means to each one of them. The words from the panelists included "promising, possibility, opportunity, and risky."
The panelists included William McColl with AIDS United, Darryl Fore with the Cleveland Ryan White Planning Council, Kathie Hiers with AIDS Alabama, Joseph Terrill with the AIDS Healthcare Foundation, and Joey Wynn with Broward House. McColl and Fore represented the pro PrEP side of the debate, and Terrill and Wynn represented the against PrEP side, while Hiers offered the middle-of-the-road perspective.
While most agreed it’s yet another tool in the tool box to combat the epidemic, feelings on the topic were VERY mixed. The positions varied and the reaction from the crowd was just as mixed. The following summarizes the panelist positions...
AIDS Healthcare Foundation position:
PrEP approval was fast tracked without regard for the potential increase in the risk of developing resistance if taken inconsistently, the possibility of increasing the likelihood of a Truvada resistant strain of HIV and the potential for increasing high risk behaviors among MSMs. The FDA approval moved forward without a hard requirement for an HIV test before a prescription, only "recommending" a test. Current concern is the push for Medicaid funding to cover PrEP. AHF doesn't think this would be a good use of public funds. The cost, implementation and monitoring of those for whom PrEP is prescribed are also concerns.
AIDS United Position:
AIDS United works with the Mapping Pathways project to help research the best means to provide information to policymakers and opinion leaders about the use of anti-retroviral drugs for prevention. AIDS United believes that PrEP is one of several new tools that will play a role in lowering new infections in the US. Like every new technology it requires ongoing and careful study to ensure that it is being used appropriately and with the least risk and that it is made available without regard for income or population disparities. That said it is a promising intervention and should continue to be explored.
AIDS Alabama Position:
PrEP adds another tool to the prevention toolbox that furthers our efforts to prevent new infections, a goal shared by everyone. However, the biggest question is a financial one. Do stakeholders push for public payment when many persons currently living with HIV disease are unable to obtain a steady supply of ARVs? Obviously all persons living with HIV/AIDS should be our top priority in ensuring that treatment is available. What are the future medical consequences for persons who do not adhere and who contract the virus, as well as long-term safety and fetal exposure issues in general that are unknown? On the other hand, persons who can afford to utilize PrEP should have every right to do so. AIDS Alabama believes that there is a benefit for persons consistently at high risk, including sex workers and people in discordant relationships.
Darryl Fore (Patient Advocate):
The PreP study is an opportunity to collect relevant data to supplement the data derived from the HIV vaccine trial. How will the PreP study affect the various HIV+ and HIV- populations, including gay men, women, seniors, youth, sex workers, IV drug users and prison populations. What are the conceived and un-conceived risks in participating in this study?
Broward House Position:
PrEp involves giving expensive HIV Medications to HIV negative individuals for an extended period of time to prevent HIV transmission. The basic concept for this intervention has good intentions, but the reality of existing implementation makes this a very bad idea as it is currently structured. South Florida local consensus statement: The Broward County Prevention Planning Partnership held a meeting May 11th 2011; a consensus statement was read, debated, and a consensus was reached. It reads, “Affected areas with large HIV communities should oppose this intervention until after 2014 and further clinical trials are completed & results analyzed.” Many local advocates, agencies & popular opinion leaders are opposed to this effort, and see no benefit from a public health or community perspective. The risks far outweigh the benefits."
A significant portion of the discussion centered around the five points of concern raised by Joey Wynn, which included:
1) Data surrounding condom use is mixed. Many gay men report the perception that they can now “Not have to use condoms if they take this medication” this absence of condom use is growing as an expectation for gay men not well versed in the iPrEx study. (@ IML referring to this as “Alternative to condoms” causing a strong response for & against the topic at the event).
2) Higher risk activities are already increasing in South Florida, as evidenced with soaring STD rates and increasing HIV rates. This “newfound invincibility to HIV” undermines our existing HIV Prevention strategies; not to mention - Hep. C, MDR gonorrhea, and other STDs.
3) Financing of the expected system of support & care not available in most areas, especially in the south, where HIV rates among gay men of all races is highest. The weekly counseling, ample supplies of condoms, support groups & risk education, as well as time for physicians to teach how to properly use this medication are not widely available. Little to nothing was provided to those gay men already using this medication that we surveyed; a prescription was written and filled. Perceptions among gay men vary widely on how often to take this, often disregarding the label instructions. Some choose to take this “only on weekends”, or just before a sexual encounter. Staffing resources do not have additional capacity to provide this service and will have to choose between traditional prevention efforts or PrEP.
4) Using Truvada as the agent is a REALLY BAD IDEA! A) this optimal backbone regimen is involved with a huge majority of treatment options currently in use in the United States. B) When taken incorrectly, or by people that think they are negative but are not, resistant strains WILL emerge. A better solution would be generic Combivir. It is vastly less expensive, poses no serious risk to the treatment therapies in use across the country in terms of resistance, and offers a history of efficacy in mother to child transmission reduction over the past 15 years.
5) This controversial intervention distracts us from our larger mission to achieve the National HIV AIDS Strategy(NHAS). We need to focus on getting positive people into care, get them on therapy and get them to undetectable viral loads, and substantially reduce new infections. HPTN 052 shows at least a 96% reduction in infections. This is double the possible best case scenario of PrEP and is the better route for the reduced funding we are experiencing nationwide.
The Town Hall meeting didn't appear to change anyone's mind, but it most certainly provided an excellent forum for the free-flowing exchange of ideas. At the end of the Town Hall meeting, Shankle had everyone write down the one word they thought of PrEP, to sum up the words everyone seemed cautiously optimistic at this time. HealthHIV developed this word cloud to summarize the feelings from those stakeholders in attendance:
Friday, July 20, 2012
Posted by Sunny Bjerk , July 17, 2012
In an election year, it’s hard to criticize the President without someone asking if that means you’re endorsing this guy. But when it was announced yesterday that President Obama will not make an in-person appearance at the 19th annual International AIDS Conference and will instead send a “brief video message” to IAC attendees, conference organizers and global AIDS leaders knocked the President for his seemingly indifferent response to the IAC’s return to the U.S. and failing to demonstrate his Administration’s commitment to fighting HIV/AIDS at home and abroad.
Charles King, President and CEO of Housing Works, called President Obama’s decision not to speak a severe miscalculation. “He is giving up an opportunity to show real leadership on AIDS here in the US and abroad.” The President’s decision to send a video message was a major let down for IAC attendees and came after months of speculation about whether or not the President would make an appearance. With the formal announcement made less than a week before the start of the IAC, which is scheduled to begin on Sunday morning, July 22nd, HIV/AIDS leaders are now calling on the Obama Administration to demonstrate its commitment to battling the epidemic by restoring the proposed cuts to PEPFAR, the President’s Emergency Plan for AIDS Relief and taking steps to reduce the number of people on the waiting list for AIDS Drug Assistance Program (ADAP) which provides medications to uninsured and low-income people across the country.
Others are calling the criticisms leveled against President Obama misleading, redirecting the focus on the HIV/AIDS measures his Administration has overseen. Programs and examples include $1 billion for ADAP programs—an increase of $67 million from previous fiscal years—and increasing funding for the Ryan White AIDS Drug Assistance Program by $75 million. Others champion the drafting and passing of the Affordable Care Act, which will cover many new populations under the revamping of Medicare, including those with pre-existing conditions, children with HIV/AIDS, individuals and families with an income below 133% of the Federal poverty line, and individuals no longer having to wait for an official AIDS diagnosis to be eligible for Medicare.
Is it a mixed bag? Absolutely. It’s undeniable that President Obama’s decision not to speak at the IAC feels like a slap in the face, considering the steady rates of HIV/AIDS infection in the country and the simple logistic fact that the conference is happening in his backyard. Who knows. Maybe he doesn’t want to run into George W. Bush, who is also scheduled to speak at the conference. Let’s hope President Obama’s actions in the next year ring louder than his video greeting.
Friday, July 6, 2012
Ohio’s AIDS advocates and supporters have, once again, been successful in their bid to stave off the advancement of the proposed regulatory changes to Ohio’s AIDS Drug Assistance Program (ADAP). During a recent meeting of the Joint Committee on Agency Review, Ohio’s Department of Health (ODH) pulled the item. In so doing, they identified the need for further review relating to both procedural and business impacts of the proposed changes.
Understanding the Proposed Changes
As discussed in previously, the proposed changes altered both the medical and the financial criteria which needed to be met in order to qualify for treatment under ADAP. Crucially, the proposals included reducing the qualifying CD4 count from 350 to 200, and reducing the financial means test qualifying level to as low as $11,000. As per the ODA, the proposed changes were intended to address the shortage of available funds in place to support Ohio’s ADAP. The ODA indicated that, by altering the program’s eligibility criteria, and in turn reducing the numbers of HIV positive patients entering the program, funds could be more effectively targeted so as to ensure that the treatment of the sickest and most vulnerable patients was possible.
In the months preceding the review meeting, much criticism had been levied at the above proposals. This criticism has come, not only from patients, but from religious groups, community groups and medical practitioners alike. As per the critique from Tom Myers, General Counsel for AIDS Healthcare Foundation:
"Changing Ohio’s medical-eligibility criteria for its ADAP, such as reducing the qualifying CD4 count from 350 down to 200, as this rule change does, is actually a form of rationing of lifesaving HIV medicines".
Dr. Thai Nguyen, an AIDS Healthcare Foundation medical provider, who is responsible for the care of over 400 HIV/AIDS patients, stated:
"While we recognise that there is a shortage of funds in the Ohio HIV Drug Assistance Program, and the ODH is trying to put in place measures to ensure that those who are the sickest have access to antiretroviral medications, I argue that adding stipulations to ration antiretroviral medications is an act that directly contradicts ODH’s mission statement, the core principles on which it operates and the national and international scientific consensus on the treatment of HIV".
Pulling the Reforms: What does it mean for HIV-positive patients in Ohio?
This week’s news that ADAP reforms would be pulled for further review is doubtless good news for Ohio’s HIV/AIDS advocates. Indeed, it represents their third victory against the reforms in six months. As per Eddie Hamilton, founder of the ADAP Educational Initiative:
"We are thrilled that this item was pulled from the JCARRS meeting agenda earlier today".
Thus, for the time being, the program’s eligibility criteria remain unaltered. Moving forward, however, the Ryan White Program is due for re-authorization in 2013 and the ODH has not committed itself to the status quo; rather to further policy review. As developments are so recent, there is little literature which speculates on the outcomes of this likely policy review. Any such review is, however, likely to focus on several key policy factors.
The Increasing Numbers of HIV Positive Patients
There is concern that the number of people testing positive for HIV-infection is on the increase. This has led some to describe America as suffering from an AIDS epidemic. Figures collected for the State of Ohio in during 2008/9 identified 16,283 people as HIV positive, and estimated at an additional 5000 undiagnosed cases. Additionally, 7,613 Ohians had received an AIDS diagnosis, representing 7.8 per 100,000 Ohians. Thus, any alternative proposed reforms must address both the need to provide for increasing patient numbers and the need to identify epidemiological demographics so as to target treatment.
Though some HIV-positive individuals in Ohio are holders of private medical insurance, many are not. Thus, it is crucial that the State reforms direct funds towards those who are not able to access treatment through another means. Nationally, Medicaid is a primary funding source for the treatment of patients with advanced AIDS diagnosis, as qualification for funding is based upon the ability to prove permanent disability. Childless adults who are HIV-positive may not, however, qualify for Medicaid. For these adults, the ODH’s Federal Ryan White HIV/AIDS program offers limited coverage. The status and provision for adults treated under the Ryan White program is likely to be a focus of ODH reviews.
Match Funding Requirements
Any review of funding must factor in the need for States to match Federal funds with their own resources when supporting patients under the Ryan White Program. With the Ohio AIDS Drug Assistance Program constituting the largest part of the Ryan White Part B Program, completion of a comprehensive match funding exercise will be essential.
The biggest criticism levied at the ODH’s previous attempts to reform the ADAP have centred on the adjustment of support thresholds. As per the ODH, the purpose of these proposed adjustments was to enable staff to direct treatment towards their least well patients. In a review, the ODH must consider both the ethical and the long term financial implications of not treating diagnosed patients on a timely basis.
Healthcare Reform 2014
Reforms of the ADAP must be considered alongside the major reforms which are expected within the Affordable Care Act (ACA). As the ACA reforms will significantly impact upon several important HIV/AIDS programs, reforms of the ADAP must be forward looking. Emphasis must be placed on ensuring that, post ACA reform, a safety net remains available to individuals who are HIV-positive.
Implementation of the National AIDS strategy
President Obama’s National AIDS Strategy aims to reduce the number of people who become infected with HIV and strives to increase access to care for those who are infected, in turn, improving their health outcomes. Further, it aims to increase consistency of care, reducing regional disparities within treatment programs. The strategy is accompanied by a Federal Implementation Plan, which identifies steps to be taken by Federal Authorities during the implementation process. The plan sets out key goals, which should be considered by the ODH when reviewing HIV policy decisions. For example, the plan states that US Federations should aim to:
‘Reduce the HIV transmission rate, which is a measure of annual transmissions in relation to the number of people living with HIV, by 30%’.
When reviewing funding and medical eligibility specifications under the ADAP, the National Aids Strategy should be considered. This strategey encourages Federal Governments to take a more strategic, streamlined and comprehensive approach to reforms. For example, by developing sound HIV awareness campaigns and increasing access to STD Kits, the OHD could reduce the spread of infection, which in turn could free up resources for individuals who test HIV-positive.
Friday, June 22, 2012
A survey (click here) of people with or affected by HIV concerning their attitudes about criminalization of HIV non-disclosure, potential exposure or transmission. It would be very helpful if as many people completed the survey, regardless of serostatus.
The principal investigator is Laurel Sprague, at Eastern Michigan University. Laurel is a woman living with HIV who is also the North American regional coordinator of the Global Network of People Living With HIV (GNP+). She's a great advocate and has extensive expertise in survey research. She's also been a consultant on the development and implementation of the GNP+ Stigma Index.
Hopes are for a large enough response to have statistically meaningful numbers of key populations including women, transpersons, people who use drugs, migrants, sex workers and those engaged in survival sex, as well as everyone else. The survey is open to people with HIV as well as those who are HIV negative or don't know their HIV status.
Preliminary results will hopefully be shared at the International AIDS Conference in DC next month. The results will be posted at www.seroproject.com.
Once again, here's the link:
Friday, June 15, 2012
ADAP Leadership Awards: It's time to recognize leaders working to improve the AIDS Drug Assistance Programs
Last year, aaa+ announced that it would host its 1st Annual ADAP Leadership Awards Dinner because it felt it was important for ADAP stakeholders to step back and reflect on the good work being done on ADAP by so many leaders - especially since the crisis itself had overshadowed much of the advocacy work. CLICK HERE to read more about last year's dinner and award recipients.
A Call for Nominations has been issued for the following awards:
• ADAP Champion of the Year (individual)
• ADAP Emerging Leader of the Year (individual)
• ADAP Corporate Partner of the Year
• ADAP Community Organization of the Year
• ADAP Lawmaker of the Year
• ADAP Social Media Campaign of the Year
• ADAP Grassroots Campaign of the Year
• ADAP Media Story of the Year
SUBMIT NOMINATIONS HERE
“While the ongoing ADAP crisis has continued longer than anyone would have liked, or imagined, so too has the persistence and commitment of the countless stakeholders in the HIV/AIDS community fighting to bring an end to these dreaded waiting lists,” said Brandon M. Macsata, CEO of the ADAP Advocacy Association. “Anyone who attended the 1st Annual Awards Dinner could tell you, it was an extremely uplifting and motivating event because it recognized many household names within our community, but also put the spotlight on some new faces. We anticipate this year’s event to be equally inspiring.”
The ADAP Champion of the Year is an award recognizing an individual who has demonstrated his/her commitment to promoting and enhancing ADAPs. Richard "Dab" Garner of Dab the AIDS Bear Project was the 2011 ADAP Champion of the Year.
The ADAP Emerging Leader of the Year is an award recognizing an individual who has demonstrated his/her commitment to promoting and enhancing ADAPs. The individual should be someone who is relatively new to the ADAP advocacy community, evidenced by his/her activities over the previous 12 months. Jason King of AIDS Healthcare Foundation was the 2011 ADAP Emerging Leader of the Year.
The ADAP Corporate Partner of the Year is an award recognizing a for-profit corporation that has demonstrated its commitment to promoting and enhancing ADAPs. Neil Romano & The Romano Group LLC, was the 2011 ADAP Corporate Partner of the Year.
The ADAP Community Organization of the Year is an award recognizing a not-for-profit corporation that has demonstrated its commitment to promoting and enhancing ADAPs. The organization should be a local or statewide organization providing advocacy, supports or services. NOTE: Nominations for national organizations will not be accepted. Stephen Gunsallus & Counseling Ministries.Org was the 2011 ADAP Community Organization of the Year.
The ADAP Lawmaker of the Year is an award recognizing a local, state or federal elected lawmaker who has demonstrated his/her commitment to promoting and enhancing ADAPs. The Honorable Alcee Hastings (D-FL) was the 2011 ADAP Lawmaker of the Year.
The ADAP Social Media Campaign of the Year is an award recognizing a social media-style campaign that has demonstrated its commitment to promoting and enhancing ADAPs. The campaign should have successfully engaged people effected and affected by HIV/AIDS fighting to improve access to care under the ADAP using social media outlets, such as Facebook, LinkedIn, Twitter, YouTube, etc. Mark King & My Fabulous Disease was the 2011 ADAP Social Media Campaign of the Year.
The ADAP Grassroots Campaign of the Year is an award recognizing a grassroots level campaign that has demonstrated its commitment to promoting and enhancing ADAPs. The campaign should have successfully engaged people effected and affected by HIV/AIDS fighting to improve access to care under the ADAP at the local level. Butch McKay & Positive Living Conference was the 2011 ADAP Grassroots Campaign of the Year.
The ADAP Media Story of the Year is an award recognizing reporting that has demonstrated a news media outlet's efforts to cover ADAPs. Charles Blow & "HIV SOS" was the 2011 ADAP Media Story of the Year.
To submit nominations, go to http://www.adapadvocacyassociation.org/pressroom.html. To learn more about the 2012 Annual ADAP Leadership Awards, 2012 Annual Conference, ADAP waiting lists, or the ADAP Advocacy Association, please contact Brandon M. Macsata by email at firstname.lastname@example.org.
Friday, May 18, 2012
This month is National Hepatitis Awareness month, and Tomorrow, May 19th has been designated by the U.S. Centers for Disease Control & Prevention (CDC) as National Hepatitis testing day.
It is estimated by the CDC that 1.2 million Americans are living with HIV-infection and it is estimated that 1 in 3 living with HIV-infection are also co-infected with Hepatitis B (HBV) or Hepatitis C (HCV). There is both acute and chronic Hepatitis C. Acute HCV is caught within the first 6 months of becoming infected, while chronic Hepatitis C can persist for as long as 20 + years, and both can be asymptomatic. Viral hepatitis progresses faster among persons with HIV-infection and persons who are infected with both viruses experience greater liver-related health problems than those who do not have HIV-infection. Although antiretroviral therapy has extended the life expectancy of persons with HIV-infection, liver disease—much of which is related to Hepatitis B and Hepatitis C infection—has become the leading cause of non-AIDS-related deaths among this population.
People living with HIV-infection who are co-infected with either Hepatitis B or Hepatitis C are at increased risk for serious, life-threatening complications. As a result, all persons living with HIV-infection should be tested for Hepatitis B and Hepatitis C by their doctors.
Hepatitis C increases the risk of death for patients with AIDS by 50%, according to the results of a large study published in the online edition of Clinical Infectious Diseases this month. A fifth of these deaths were attributable to liver-related causes, five times the rate seen in people with AIDS who were not co-infected. The investigators also found that a third of co-infected patients were unaware of their hepatitis C infection.
Below are some more facts from the CDC:
The following is some general information about Hepatitis C.
What are the symptoms of acute Hepatitis C?
Approximately 70%–80% of people with acute Hepatitis C do not have any symptoms. Some people, however, can have mild to severe symptoms soon after being infected, including:
How is Hepatitis C spread?
Hepatitis C is spread when blood from a person infected with the Hepatitis C virus enters the body of someone who is not infected. Today, most people become infected with the Hepatitis C virus by sharing needles or other equipment to inject drugs. Before 1992, when widespread screening of the blood supply began in the United States, Hepatitis C was also commonly spread through blood transfusions and organ transplants.
People can become infected with the Hepatitis C virus during such activities as:
Less commonly, a person can also get Hepatitis C virus infection through sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes.
Hepatitis B and C can be cured. The earlier the infection is diagnosed the better there is a chance at curing it. Though, with new medicines and much more in the pipeline – chronic Hepatitis C sufferers are also finding it easier to cure Hepatitis C. Many clinics have the capability of doing rapid HCV screenings, much like the HIV test where a patient's status can be determined in 20 minutes. Treatment options for Hepatitis C are becoming more effective and less toxic to the body. !
Friday, May 11, 2012
Overall, the survey findings demonstrate support for rapid OTC testing - particularly from the HIV community - with approximately half of the respondents identified as people living with HIV/AIDS. It should be noted that the survey was conducted online, and thus its findings are not scientific. However, it offers some interesting insights.
Seventy-four percent (74%) of respondents said that they would support an OTC rapid, oral swab HIV test that could be purchased in a retail store, if approved by the FDA.
Other key findings of the survey found:
“Our survey demonstrates widespread support for additional testing options, especially among younger generations and those who are already living with HIV,” said Tom Donohue, Founding Director of Who’s Positive. "Over-the-counter testing has the potential to break down barriers and empower people who have never been tested before to learn their HIV status and, if positive, find the care and support they need."
How will an over the counter test affect already cash strapped AIDS Drug Assistance Programs? The jury is still out on that. As of May 10, 2012, there are 2,759 individuals on ADAP waiting lists in ten (10) states, according to the National Alliance of State & Territorial AIDS Directors (NASTAD) report. The number of states with waiting lists and individuals on them held relatively steady from last week’s update with a total increase of 55 individuals.
Friday, May 4, 2012
Like the protagonists in Waiting for Godot, the 1.2 million Americans who are HIV-positive are anxiously waiting. But unlike the gentlemen in Samuel Beckett’s classic play who wait in vain for someone who never shows up, the HIV community is awaiting something that almost certainly will arrive in June. That is when the U.S. Supreme Court will deliver its decision on the constitutionality of the Affordable Care Act.
If the Court upholds the ACA, it would mark a decisive turn in the fight against AIDS. First, the Act would expand Medicaid so that lower-income HIV sufferers can get earlier access to treatment. And second, it would eliminate the “pre-existing condition” limitations that have made it all but impossible for many HIV-positive people to obtain private insurance. According to the National Minority AIDS Council, these two provisions would “prolong life potentially by decades for literally hundreds of thousands of persons.”
With the Court’s decision just a month or so away, it is tempting to cross our fingers, sit on our hands ---and wait.
We must not succumb to that temptation.
For one thing, there’s no guarantee that the ACA will survive. And even if it does, most of the Act’s major provisions won’t take effect until 2014, or even later ---longer than many HIV-positive folks can afford to wait, in particular, the 3,079 individuals on waiting lists in 10 states to gain access to their life-saving medications under the AIDS Drug Assistance Program. More important yet, under the ACA, the federal government will effectively quit paying for health care in 2019. And when the feds turn off the spigot, we’ll still be left with the bills.
When that happens, the results are predictable. Programs will be cut. The needy will take yet another step backwards. Those with HIV and other chronic conditions will again fall victim to the long knives of congressional and state appropriators. And those of us on the front lines of the AIDS battle will once again be asking “what do we do now?”
One thing we can’t do is expect the pharmaceutical industry to shoulder the burden alone.
Like any business or industry, pharmaceutical companies need revenue, capital for new investments and shareholders who demand that they earn a profit. That means there is a limit to how much they can cut prices ---and a limit to how much we should expect them to.
One thing pharmaceutical companies can do, however, is drop their resistance to the creation of a single, common, and industry-wide Patient Assistant Program enrollment form. This step alone would simplify the process, eliminate confusion, and make it far easier for assistance to reach the people who need it most.
But even if the industry gets on board, there would still be a host of legal and operational obstacles to creating a single, common and universally-accepted PAP form. Instead of asking the federal government to become involved, I believe there is a private sector solution.
EHIM ---the company for which I serve as Chief Operating Officer ---is currently reviewing every PAP form from every drug manufacturer. Our goal is to take the pharmaceutical industry a solution so excuse is not a four letter word.
Meanwhile, there is another major problem brewing that we need to get ahead of. An over-the-counter HIV test is on now the horizon. While this would be a major breakthrough in identifying people in need of help, it would also likely swamp already bloated AIDS ADAP waiting lists. At present, there are over three thousand people across 10 states who have received an HIV diagnosis ---and many more not yet ADAP-certified ---on these lists. Making them even longer isn’t an attractive option.
But that is exactly what will happen unless eligibility for ADAP is expanded and Congress agrees to a long term funding commitment. I hope the pharmaceutical industry will take the first step by agreeing to allow any person with HIV and without prescription drug insurance coverage to be eligible for the ADAP solution.
Committing ourselves to ensuring that anyone with HIV but no insurance gets help would stop a race to the bottom in which states steadily lower ADAP income eligibility requirements. And in the long run, it would actually save money by slowing the flood of patients going to ERs because they don’t have access to medication.
Finally, there is one more thing to which all of us must commit. And that is to bring civility, respect and the word compromise back into our politics and national discourse. Who among us is infallible or has all the answers? Today ---more than ever- -we need intelligent public policy, not blind partisanship. HIV has no political affiliation; everyone who suffers from it is a member of our family ---the human family.
Jeffrey Lewis is the Chief Operating Officer at EHIMRx and the former President of the Heinz Family Philanthropies. He can be reached at email@example.com. This material was part of his keynote address at the recent HIV Summit in Washington, DC. Lewis is also the past recipient of the ADAP Advocacy Association's ADAP Champion Award.
Friday, April 27, 2012
On April 2nd & 3rd, the ADAP Advocacy Association (aaa+) hosted its ADAP Solutions Summit to identify improvements and reforms that could enhance the AIDS Drug Assistance Program (ADAP). As a consumer of ADAP services, I found these 2 days -- which brought consumers, industry, advocates and other stakeholders to the same table for the first time -- to be very productive. I met many folks, some consumers, some not, but all with one commonality; all indebted to the cause of helping ensure that every American has access to the care and treatment they need to remain alive, healthy, and productive. At no point was anyone's intentions or commitment called into question, and that is the way it should be done!
As a consumer of ADAP services, I want to touch on the aspects of some of the proposed enhancements that I feel could have an immediate impact by bringing more people into care, coinciding with President Obama's goals set forth in the National AIDS Strategy (NAS). Before I do so, I feel obliged to share with you my brief personal story.
Immediately after leaving his office, I started to put an action plan into place. First, I called Callen-Lorde (a CBO in NYC), and was offered an appointment the very next day. Then I called my HR department where I was working, to find out about taking a leave of absence. I learned of the Family Medical Leave Act (FMLA), and under this federal law it allowed me the time off that I needed to get to my doctor appointments, begin my chosen Anti-Retroviral Therapy (ARV), seek out support, and to learn everything that I could about living with this disease.
A month later with follow up labs, I was then told I had Hepatitis C, genotype 1a. WHAT?!? I felt like someone punched me in the stomach, and I fell to the floor, because this diagnosis through me for a loop. My doctor said is mainly contracted by people who share needles; I wasn’t an intravenous drug user (IDU) in my instance it piggy backed onto the HIV-infection. Now I was angry; how could this happen to me? I knew nearly NOTHING about this disease. So, I went home to read more about it, and found out I could clear the virus. I found a doctor in NYC , and soon after I began the dreaded interferon + Ribavirin therapy. At the forth week, I had a sustained virologic response, and at the 6 month post-treatment, I still had an SVR, I have cured Hepatitis C.
During this time of personal distress I coined the phrase “Rise up To HIV.” It started out as a personal platform to tell my story, and has since morphed into a personal AND advocacy platform. At a time when I could have given up, I chose to rise up, stand out, and speak up about my dual diagnosis, and about issues facing the community of 1.2 million people living with HIV/AIDS, including those who are co-infected with Hepatitis C that I belong to.
I can say that I am alive today; equally important, I am healthy because of the AIDS Drug Assistance Program granted me access to the life-saving medications that I needed to survive. As ACT UP celebrates its 25th anniversary, it is hard not to see ADAPs existing today. Many individuals and leaders got fed-up with watching dozens upon dozens of their friends and loved ones die. They themselves -- some of them on the brink of death -- started a movement to recognize AIDS and to demand treatment and services for those infected with the disease. To them, I say "thank you." We have you to thank for the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, as well as the AIDS Drug Assistance Program was formed.
There are thousands more PLWHAs who share similar stories, or ones even more dire.
Today, ADAP is facing the "Perfect Storm" and some would even suggest that it is in grave danger. If full funding for ADAP and other vital HIV/AIDS services is not restored to the levels of the law's legislative intent, and increased to keep up with the demand, then we WILL have flashbacks to the 1980s and 1990s; people will be dying. This time, not because we have no medicine to treat the disease, but because we don’t have the funding to provide it to everyone who needs it.>p> Currently, there are over 3,000 people across 10 states on ADAP wait-lists. Though this number does not reflect individuals in states that have reduced financial eligibility, or capped enrollment, it provides a very public face for the crisis. I’ll share with you some scary statistics:
We are facing a public health crisis, unseen since the epidemic began. The weak economy has crippled state budgets that pay into ADAP, and the federal government's commitment as a share of total spending on the program has declined over the last 5-6 years. In addition, prevention initiatives and other supportive services such as HOPWA funds have dried up in communities across the nation.
Further, many states have employed cost containment strategies, such as reduced formularies, lowered financial eligibility levels, implemented client cost sharing, or program enrollment caps. These strategies have disqualified individuals who would have previously qualified for ADAP.
Without reliable access to the medications, which cost patients under the AIDS Drug Assistance Program an average of less than $10,000 a year, PLWHAs are more likely to acquire opportunistic infections, develop full-blown AIDS, transmit the virus and require expensive hospitalizations, and even die.
On May 12th, 2011, the University of North Carolina at Chapel Hill led an international study that showed early treatment with antiretroviral therapy prevents HIV transmission. The result of the study (HPTN05) was that those taking ARV were 96 percent less likely to pass on the disease than those who didn’t take ARV. This critical new finding convincingly demonstrates that early treatment of infected individuals can have a major impact on the spread of the epidemic.
Combined, the advanced scientific studies, new treatment guidelines, and new prevention messages/campaigns at the national, state, and local level are increasing the demand on ADAPs. That demand is far outpacing the required funding to meet the needs of PLWHA. It is fueling this crisis, but it has to stop now! HIV/AIDS is still a communicable and deadly disease, and our government must continually remind themselves of these facts and provide the adequate funding to provide proper treatment to those already infected, while also preventing the spread of the virus to others.
As a consumer who has self-maneuvered the complexities of the ADAP system, I want to highlight the enhancements talked about during the ADAP Solutions Summit. I believe that they will be most beneficial to bring more people into care, and retain those already receiving ARVs.
Fortunately I now live in Washington, DC and I was living in NY prior; both places have a very robust ADAP program. If I were in the White House I would conduct a very thorough and comprehensive review on each state ADAP, and begin the discussion on how best to move forward with a uniform AIDS Drug Assistance Program that can serve everyone regardless of geographic location, or socio-economic status. Too many people are falling through the cracks.
Again I ask: "Why do I have access to the care and treatment needed to stay alive, remain healthy, and productive; while others are on wait-lists or who have been shut out of care because of cost containment strategies?" Of course, it is a rhetorical question. This is not right, and this is not the American way!
I encourage you to read the Final Report issued by the ADAP Advocacy Association after its ADAP Solutions Summit. It can be downloaded here: http://www.adapadvocacyassociation.org/publications.html
Friday, April 6, 2012
States rationing HIV treatment is DANGEROUS MEDICINE; Sick people get better, healthier people get sicker
The Health Resources & Services Administration (HRSA), under the U.S. Department of Health & Human Service (HHS), has stated unequivocally that using medical criteria in administering wait-lists in HRSA Programs is considered to be a discriminatory practice, and just recently the Institute of Medicine said ALL treatment naïve patients should be on anti-retroviral medication (ARV). Also, a study published last year (HPTN052) proved that those taking ARVs are 96 percent less likely to pass the virus onto their partner. Despite federal policy and the strong scientific evidence, medical criteria remains on the table in states like Ohio. The proposed rules give highest priority on the wait-list to PLWHA who are pregnant and who have CD4 counts lower than 201. The medical criterion makes no mention of an important aspect of HIV care, which is the Viral Load.
The rules proposed by the Ohio Department of Health (below) are oppressive for PLWHA, and they are indeed dangerous for public health. In essence, states implementing medical criteria result in creating a viscous cycle whereby "sick" patients are allowed to get better, and "healthy" patients are forced to get ill.
Medical criteria completely overlooks that as "healthier" patients get "sicker" the demand for medical care and treatment rises, and the cost benefit of treating someone with HIV-infection vs. not treating someone with HIV-infection has proven itself over the years. It is more cost effective to treat someone healthier, than to wait until they are sick. The Ohio proposed rules is not a cost-effective strategy for health officials, politicians and taxpayers.
Thirty 30 years after the HIV/AIDS epidemic began less toxic medicines are available to keep people alive and healthy, and to keep people productive so that they can provide for themselves and others. Many PLWHA can work, access health insurance, and lead normal productive lives. More importantly someone on medicine is less likely to transmit the virus.
Ohio HIV/AIDS advocates have decried against the proposed rules, arguing that the state is trying to implement these rules on the backs of the poor and vulnerable, especially those living with a potentially life threatening disease such as HIV/AIDS.
The Ohio Department of Health (ODH) has instituted the following medical criteria.
When OHDAP has a waiting list for program enrollment and subject to sufficient funding, applicants to the Ryan White Part B programs must meet one of the following medical guidelines to be eligible for expedited enrollment:
1. Pregnant women who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide antiretroviral (ARV) medications.
2. Post-partum women (women who given birth within 180 days prior to applying to OHDAP) who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide antiretroviral (ARV) medications.
If the OHDAP is able to enroll some but not all individuals from the waiting list (based on insufficient funds), applications from individuals who meet all OHDAP eligibility criteria and who are not eligible for other programs which provide ARV medications will be prioritized as follows:
Priority 1: Individuals with HIV and other extreme medical conditions such as, but not limited to, HIV-associated nephropathy or HIV related dementia. The applicant’s HIV-treating physician or nurse practitioner shall complete a medical waiver request
consistent with section 3701-44-04 of the Ohio Administrative Code.
Priority 2: Individuals with a history of AIDS-defining illness [see paragraph (C) of Appendix A to section 3701-3-12 of the Ohio Administrative Code for indicator diseases diagnosed definitively] and/or a nadir CD4 count of less than or equal to 200 cells/mm3 (or less than 14%). Documentation shall be provided by the HIV treating physician or nurse practitioner evidencing how the individual meets this priority.
Priority 3: Individuals with HIV and a nadir CD4 count between 201-350 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.
Priority 4: Individuals with HIV and a nadir CD4 count between 351-500 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.
Priority 5: Individuals with HIV and a nadir CD4 count above 500 cells/mm3. Documentation shall be provided by the HIV-treating physician or nurse practitioner evidencing how the individual meets this priority.
The motto of the Ohio Department of Health is "to protect and improve the health of all Ohioans"; but the unintended consequences that would result from the state implementing its proposed rules on medical criteria for ADAP would undermine that motto. Ironically, Ohio cannot afford to adopt this proposed rule because it will only cost the state more money in other health-related costs.
Not only has Ohio instituted the above medical criteria, they have also reduced financial eligibility from 500 percent of the Federal Poverty Level (FPL) to 300% FPL. Many other states have also reduced their FPL, thus shutting people out of care and treatment. The latest ADAP waiting list numbers, and states who have implemented other cost containment strategies, are made available by the National Alliance of State & Territorial AIDS Directors (NASTAD), and can be reviewed by downloading the ADAP WATCH!
Every person living with HIV/AIDS should have access to the care and treatment they need to remain alive, healthy and productive. PLWHAs seeking access to care and treatment should not be subjected to dangerous medicine!